August 19, 2026
The end of last week I took the girls to see Kyndal (American Idol famous singer)at a tiny little lounge in Denver. Tate hasn’t had a good run since we got home from the hospital a bit over a week ago, so it was a nice evening rally and just a sweet night with both my girls. We all cherish these moments more and more. We ran into one of Tates very loved neuro immunology Dr’s and her sweet Dr. hubby. We were joking that Tate is her first patient interaction at a “bar.” We you Dr. Young!
Tate was in for blood cultures again yesterday after days of consistent fever symptoms and some breakthrough temps with both Tylenol and ketorolac. Her migraines have been terrible and nausea and just feeling lousy a daily pest. We are 16 hours into the cultures with no phone call yet. This is a situation where an infection is very bad, but is something we could treat to get her better. We just don’t understand what her body is doing if they don’t grow. It feels exhausting to just sit in this every.single.day.
I saw lots of grief from Tate yesterday. Back to school time is always hard. It’s a bright, neon highlighter for all the normal things she’s missed and continues to grieve.
Tomorrow she will be sedated for a scope to look into her swallowing issues. We are praying FOR EOE, which she had post transplant and runs in our family and praying AGAINST a neurological component as we’re seeing neuro decline once again.